Prednisolone reactions

Posted by marg47 @marg47, Dec 18, 2023

I'm 76 years old, diagnosed in August 2023. Have been on prednisolone starting at 50 mg per day over 28 days then weaning to 5 mg per day throughout that time. At this dosage my symptoms returned, I'm now on 15 mg per day and after two weeks it's having the effect on me of hyper, constant working around the house etc. Not that this is Bad thing but I now cannot sleep I am up 4 or of 7 nights with no sleep. My prednisolone is to be weaned Down every 28 days by 2.5 mg until down to 5 mg. It will be well into next year before I reach that level. Anyone with similar reaction. It didn't happen to me the first time! I'm also on Methotrexate.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

I just had a course of prednisone for my RA Flare that was 4 days at each of 20mg, then 15,10,5,2.5 . I don’t sleep all that well anyway so I took my daily dose at 5:30 or 6 am. And at night I took a Tylenol pm. But man I loved it! High energy, great mood and rib pain gone. It’s a shame it would make my bones like sponge.

REPLY

@pb50
Does a moderate dose and fast taper of prednisone result in remission of RA flares? I used to do something similar for flares of reactive arthritis. Usually I took about 25 mg and tapered off prednisone again in less than a month.

Flares of uveitis were different and involved higher doses ... up to 100 mg of prednisone. I had to taper quickly down to the 20 - 30 mg range. I was higher than a kite on 100 mg of prednisone. I wasn't ever psychotic but I felt weird and could NOT sleep. People around me would ask me how much prednisone I was taking. My ophthalmologist didn't want me to feel too good and wanted me to taper lower as soon as I could. It would take me about 2 months to taper back to 0 mg when treating uveitis.

My PMR diagnosis was delayed by nearly a year. Prednisone was being restricted even though I was begging doctors to prescribe it to me. I was told repeatedly that reactive arthritis wasn't treated with long term prednisone. Suddenly one day I was told I had PMR and I would be on prednisone for at least a year. A asked what happened to reactive arthritis and the reply was that it was still there. Then my rheumatologist said, "It was unfortunate but now I had both reactive arthritis and PMR.

I never could taper off prednisone after that. My PMR starting dose was 40 mg. I remember at one stage being on 30 mg and my rheumatolgist checked my inflammation markers. She was amazed that my inflammation markers were still high on 30 mg of prednisone and told me to increase my dose to 35 mg.

I had a "built in" inflammation alarm so I knew exactly when my inflammation levels were too high. Trigeminal neuralgia (TN) would flare up and the electric zaps to my face were excruciating. There was no limit to how much I increased my prednisone dose for TN. I messaged my PCP once that I was having 1,000 zaps per day and said I wanted to take 100 mg of prednisone again. He called me back as soon as he got my message and asked me if I was sure 100 mg would be enough.

REPLY
@dadcue

@pb50
Does a moderate dose and fast taper of prednisone result in remission of RA flares? I used to do something similar for flares of reactive arthritis. Usually I took about 25 mg and tapered off prednisone again in less than a month.

Flares of uveitis were different and involved higher doses ... up to 100 mg of prednisone. I had to taper quickly down to the 20 - 30 mg range. I was higher than a kite on 100 mg of prednisone. I wasn't ever psychotic but I felt weird and could NOT sleep. People around me would ask me how much prednisone I was taking. My ophthalmologist didn't want me to feel too good and wanted me to taper lower as soon as I could. It would take me about 2 months to taper back to 0 mg when treating uveitis.

My PMR diagnosis was delayed by nearly a year. Prednisone was being restricted even though I was begging doctors to prescribe it to me. I was told repeatedly that reactive arthritis wasn't treated with long term prednisone. Suddenly one day I was told I had PMR and I would be on prednisone for at least a year. A asked what happened to reactive arthritis and the reply was that it was still there. Then my rheumatologist said, "It was unfortunate but now I had both reactive arthritis and PMR.

I never could taper off prednisone after that. My PMR starting dose was 40 mg. I remember at one stage being on 30 mg and my rheumatolgist checked my inflammation markers. She was amazed that my inflammation markers were still high on 30 mg of prednisone and told me to increase my dose to 35 mg.

I had a "built in" inflammation alarm so I knew exactly when my inflammation levels were too high. Trigeminal neuralgia (TN) would flare up and the electric zaps to my face were excruciating. There was no limit to how much I increased my prednisone dose for TN. I messaged my PCP once that I was having 1,000 zaps per day and said I wanted to take 100 mg of prednisone again. He called me back as soon as he got my message and asked me if I was sure 100 mg would be enough.

Jump to this post

I would say it dials down the flare to kind of an everyday level. I resist Prednisone because I don’t want the side effects and I want to continue to tolerate background pain. In this case I had a really bad tendon trap on my middle finger. He didn’t think it was a typical trigger finger and I don’t think it is Dupuytren’s contracture. So he gave me a low dose and quick taper. Interestingly it only barely improved the finger (and I have appt soon with hand surgeon) but… but it magically eliminated my rib and diaphragm pain from my lobectomy in May. Not improved… eliminated! I was so happy. But once I got below 12 mg the benefit went away too.
I felt like Cinderella at midnight.

What inflammation markers do they check for you? Like Sed rate?

REPLY
@pb50

I would say it dials down the flare to kind of an everyday level. I resist Prednisone because I don’t want the side effects and I want to continue to tolerate background pain. In this case I had a really bad tendon trap on my middle finger. He didn’t think it was a typical trigger finger and I don’t think it is Dupuytren’s contracture. So he gave me a low dose and quick taper. Interestingly it only barely improved the finger (and I have appt soon with hand surgeon) but… but it magically eliminated my rib and diaphragm pain from my lobectomy in May. Not improved… eliminated! I was so happy. But once I got below 12 mg the benefit went away too.
I felt like Cinderella at midnight.

What inflammation markers do they check for you? Like Sed rate?

Jump to this post

ESR and CRP ... they were always high until I started taking Actemra. When they were first checked after I started Actemra my markers were really low. I asked my rheumatologist if they were too low because I had never seen them that low before.

I don't know why my ESR and CRP are checked anymore. Supposedly those markers aren't a reliable indication of disease activity when people are on Actemra. My symptoms are "tolerable background pain" like you say.

REPLY
@pb50

I would say it dials down the flare to kind of an everyday level. I resist Prednisone because I don’t want the side effects and I want to continue to tolerate background pain. In this case I had a really bad tendon trap on my middle finger. He didn’t think it was a typical trigger finger and I don’t think it is Dupuytren’s contracture. So he gave me a low dose and quick taper. Interestingly it only barely improved the finger (and I have appt soon with hand surgeon) but… but it magically eliminated my rib and diaphragm pain from my lobectomy in May. Not improved… eliminated! I was so happy. But once I got below 12 mg the benefit went away too.
I felt like Cinderella at midnight.

What inflammation markers do they check for you? Like Sed rate?

Jump to this post

I have had so many trigger fingers in the past --- too many to count. Sometimes I could release them myself but not always.

I also had a "spontaneous" tendon rupture when I pushed a button with my thumb. They were able to reattach my thumb so it works now.

REPLY
@dadcue

I have had so many trigger fingers in the past --- too many to count. Sometimes I could release them myself but not always.

I also had a "spontaneous" tendon rupture when I pushed a button with my thumb. They were able to reattach my thumb so it works now.

Jump to this post

Gracious the trigeminal pain sounds dreadful. I had a cousin who had trigem issues - not autoimmune type but terrible.

Have a great day.

REPLY
@pb50

Gracious the trigeminal pain sounds dreadful. I had a cousin who had trigem issues - not autoimmune type but terrible.

Have a great day.

Jump to this post

My trigeminal neuralgia wasn't autoimmune ... I just took prednisone because it seemed like the only thing that helped me deal with the stress of that kind of pain for nearly 25 years.

I would say my trigeminal neuralgia was another example of prednisone's "masking effect." I suffered with trigeminal neuralgia until it became refractory.

I was told when it first became a problem that they couldn't find anything wrong. When I started showing up in the emergency room because the facial electricity wouldn't stop, they were forced to take another look. Imaging had improved by then so they discovered the cause. I had surgery a few days later.

I still have some problems because now the entire left side of my face is essentially numb but I don't feel the electricity anymore. The neurosurgeon said prednisone was probably helping the swelling and inflammation in the minuscule area near my brain stem where the problem was. The surgery is called microvascular decompression (MVD surgery for trigeminal neuralgia).

The neurosurgeon said he did the best he could. I haven't had any major problem with TN since the surgery. After the surgery, I was able to decrease my prednisone dose by 10 mg.

REPLY

That is remarkably similar to my cousin’s story. I don’t recall the details but she lives in Nashville so docs at Vanderbilt were finally able to somehow neutralize the pain.

REPLY
@dadcue

I have had so many trigger fingers in the past --- too many to count. Sometimes I could release them myself but not always.

I also had a "spontaneous" tendon rupture when I pushed a button with my thumb. They were able to reattach my thumb so it works now.

Jump to this post

How did you release trigger finger yourself?

REPLY

@pb50

It was like a hand massage in the area where the tendon was stuck. There was a technique to it that I wasn't very good at. Someone with 2 good hands can do it better.

There was a nodule where the tendon was stuck. If you press on the nodule and massage it - sometimes it releases the trigger finger. Never force your finger straight. I would never force it because it would hurt too much. I was told to do the massage right away as soon as a trigger finger happens. The longer you wait the harder it becomes to release it.

You can do some things for the prevention of trigger fingers. The following video shows you how.
https://www.google.com/search?q=hand+massage+for+trigger+finger&rlz=1CAJPEZ_enUS988&oq=hand+massage+for+trigger+finger&gs_lcrp=EgZjaHJvbWUyBggAEEUYOdIBCjExNTA5ajBqMTWoAgCwAgA&sourceid=chrome&ie=UTF-8
Trigger fingers are caused by inflammation and scar tissue which tends to form in the tendon sheath. They usually want to inject some steroids into the area after the trigger finger is released. This helps to prevent a trigger finger from recurring.

REPLY
Please sign in or register to post a reply.